Skip to main content Accessibility help

Achieving consensus and controversy around applicability of palliative care to dementia

  • Jenny T. van der Steen (a1), Lukas Radbruch (a2), Marike E. de Boer (a1), Saskia Jünger (a3), Julian C. Hughes (a4), Phil Larkin (a5), Dianne Gove (a6), Anneke L. Francke (a1) (a7), Raymond T.C.M. Koopmans (a8), Pam Firth (a9), Ladislav Volicer (a10) and Cees M.P.M. Hertogh (a1)...



People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.


To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.


Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.


Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.


Corresponding author

Correspondence should be addressed to: Jenny T. van der Steen, PhD; VU University Medical Center, EMGO Institute for Health and Care Research, Department of General Practice & Elderly Care Medicine, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. Phone: +31-20-4449694; Email:


Hide All
Akushevich, I., Kravchenko, J., Ukraintseva, S., Arbeev, K. and Yashin, A. I. (2012). Age patterns of incidence of geriatric disease in the U.S. elderly population: medicare-based analysis. Journal of the American Geriatrics Society, 60, 323327. doi: 10.1111/j.1532-5415.2011.03786.x.
Alemayehu, E. et al. (1991). Variability in physicians’ decisions on caring for chronically ill elderly patients: an international study. CMAJ: Canadian Medical Association Journal, 144, 11331138.
Brayne, C., Gao, L., Dewey, M. and Matthews, F. E.; Medical Research Council Cognitive Function and Ageing Study Investigators (2006). Dementia before death in ageing societies–the promise of prevention and the reality. PLoS Medicine, 3, e397.
Davies, N. et al.; IMPACT research team (2014). Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging & Mental Health, 18, 400410. doi: 10.1080/13607863.2013.843157.
European Association for Palliative Care (EAPC) (2009). White Paper on standards and norms for hospice and palliative care in Europe: part 1. European Journal of Palliative Care, 16, 278289.
Ferri, C. P. et al.; Alzheimer's Disease International (2005). Global prevalence of dementia: a Delphi consensus study. Lancet, 366, 21122117.
Froud, R. et al. (2011). Reporting outcomes of back pain trials: a modified Delphi study. European Journal of Pain, 15, 10681074. doi: 10.1016/j.ejpain.2011.04.015.
Hinkka, H., Kosunen, E., Metsänoja, R., Lammi, U. K. and Kellokumpu-Lehtinen, P. (2002). Factors affecting physicians’ decisions to forgo life-sustaining treatments in terminal care. Journal of Medical Ethics, 28, 109114.
Iqbal, S. and Pipon-Young, L. (2009). The Delphi method. The Psychologist, 22, 598600.
Johnson, T. P. and Wislar, J. S. (2012). Response rates and nonresponse errors in surveys. JAMA, 307, 18051806.
Lee, D. and Begley, C. E. (2012). Physician attitudes towards chronic disease management in the USA. Health Services Management Research, 25, 6067. doi: 10.1258/hsmr.2012.011026.
Meijering, J. V., Kampen, J. K. and Tobi, H. (2013). Quantifying the development of agreement among experts in Delphi studies. Technological Forecasting & Social Change, 80, 16071614.
Molloy, D. W. et al. (1991). Factors affecting physicians’ decisions on caring for an incompetent elderly patient: an international study. CMAJ: Canadian Medical Association Journal, 145, 947952.
Nakanishi, M. et al. (2015). An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. International Psychogeriatrics, February 13, Epublished ahead of print.
National Consensus Project for Quality Palliative Care (2013). Clinical Practice Guidelines for Quality Palliative Care, 3rd edn, Pittsburgh PA, USA: National Consensus Project. ISBN 1-934654-35-3.
National Palliative Care Research Center (NPCRC). What is Palliative Care?; last accessed 3 February 2015.
Powell, C. (2003). The Delphi technique: myths and realities. Journal of Advanced Nursing, 41, 376382.
Procter, E. (2012). Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia? International Journal of Palliative Nursing, 18, 339347.
Quill, T. E. and Abernethy, A. P. (2013). Generalist plus specialist palliative care–creating a more sustainable model. The New England Journal of Medicine, 368, 11731175. doi: 10.1056/NEJMp1215620.
Treves, T. A. and Korczyn, A. D. (2012). Modeling the dementia epidemic. CNS Neuroscience & Therapeutics, 18, 175181. doi: 10.1111/j.1755-5949.2011.00242.x.
United Nations Statistics Division (2013). Composition of Macro Geographical (continental) Regions, Geographical Sub-regions, and Selected Economic and other Groupings.; last accessed 3 February 2015.
van der Steen, J. T. (2010). Dying with dementia: what we know after more than a decade of research. Journal of Alzheimer's Disease, 22, 3755. doi: 10.3233/JAD-2010-100744.
van der Steen, J. T., Hertogh, C. M., de Graas, T., Nakanishi, M., Toscani, F. and Arcand, M. (2013a). Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. Journal of Medical Ethics, 39, 104109. doi: 10.1136/medethics-2012-100903.
van der Steen, J. T., Onwuteaka-Philipsen, B. D., Knol, D. L., Ribbe, M. W. and Deliens, L. (2013b). Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study. BMC Medicine, 11, 105. doi: 10.1186/1741-7015-11-105.
van der Steen, J. T. et al. (2014a). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28, 197209. doi: 10.1177/0269216313493685.
van der Steen, J. T., Ribbe, M. W., Deliens, L., Gutschow, G. and Onwuteaka-Philipsen, B. D. (2014b). Retrospective and prospective data collection compared in the Dutch End Of Life in Dementia (DEOLD) study. Alzheimer Disease and Associated Disorders, 28, 8894. doi: 10.1097/WAD.0b013e318293b380.
van der Steen, J. T. et al. (2014c). Factors associated with initiation of advance care planning in dementia: a systematic review. Journal of Alzheimer's Disease, 40, 743757. doi: 10.3233/JAD-131967.
World Health Organization (WHO) (2002). Definition of Palliative Care.; last accessed 24 February 2015.
World Health Organization (WHO) (2012). Dementia: A Public Health Priority. Geneva, Switzerland. ISBN 978 92 4 156445 8.


Type Description Title
Supplementary materials

Van Der Steen supplementary material S1
Online Supplement

 Word (27 KB)
27 KB


Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed